The Rest of the Story

When my 2 1/2-year-old daughter was diagnosed with type 1 diabetes, the wonderful doctors and nurses patiently armed my husband and me with seemingly everything we needed to know to care for her properly. Yet nobody warned us about the emotional impact. This is what I wish I had been told about diabetes in the beginning.

The Guilt. For months I had tremendous guilt about my child having diabetes. I felt terribly about chalking up her symptoms to other things. Wetting the bed? She had been potty training. Incredibly thirsty? A growth spurt. Mood swings? She was 2! I thought it was my fault she had diabetes, either because of my own lousy genetics or for not knowing sooner and sparing her diabetic ketoacidosis. But the guilt dissipates when you recognize you got your child help as soon as you knew something was wrong. It goes away entirely when you acknowledge that now you are doing everything possible to keep your child healthy.

The Grief. It dawned on me one day that, with bouts of crying and depression, I was grieving for my daughter's pancreas. Other parents of type 1s tell me they grieved for the lives they had dreamed of for their children, free of diabetes. Time does help heal this grief. Knowing that my daughter's life can still be everything she wants it to be completely overcomes it.

The Helplessness. I remember my husband looking at me with tears in his eyes and saying, "I'm her Daddy. I'm supposed to protect her from everything, but I can't protect her from her own body." During a diabetes crash course that first week, I shut down and told the nurses that I refused to learn anything else that day because I had never felt so stupid in my life. But diabetes almost imperceptibly becomes routine. As it does, the helplessness abates and confidence replaces it. Diabetes is still there, it's always there, but it's not blocking out the rest of your life.

The Anger. This was the hardest for me to overcome: I was angry that this had happened to my child, could happen to any child. I directed my anger at my spouse, my family, anyone who didn't understand what we were going through, especially if they made careless or insensitive comments about diabetes. But I realized I didn't like how diabetes had changed me. Instead of internalizing anger, channel it into a passion for making a difference: Become an advocate or a fund-raiser. See a rude comment as a chance to educate. Feel that you're being proactive in fighting this disease.

The Epilogue. My daughter is now 5. She's flourishing. Despite rough times with highs and lows, she is far less affected by having diabetes than her father and I are by her having it. We tell her she has diabetes because she's so sweet. She will have a normal childhood and grow up to be anything she wants to be, although perhaps a bit more responsible, empathetic, and health conscious. That's something else I wish they had told me about diabetes—how incredibly special our type 1 kids are.

Marijane Gray is a freelance writer and the stay-at-home mom of daughters Cadence, 5, and Halo, 3, in Greensboro, N.C. She is training a diabetes alert dog for Cadence.